Wednesday, 26 August 2015

Women with Pulmonary Hypertension are advised against pregnancy because of the associated risks. It is difficult to articulate the loss one feels over something they
never had. I never had a child (nor did I lose one,) but losing the
ability to get pregnant is painful in a way where you grieve and mourn.
Although no one has physically died, it feels as if a death has happened. Suddenly the dreams of painting with my son or daughter, opening gifts on Christmas morning and reading them a story before bed (like my parents had done for me,) are all gone. Throughout this experience my friends and family have assured me that although I am sick, I am still the same person. The truth is, you cannot go through something like this and stay the same person. It changes you.

Being a product of Generation Y I have witnessed the birth and growth of social media. I have witnessed an age with over sharing- yet there is still a stigma around sharing anything unpleasant like loss. I touched briefly in my last personal post 'Isolated and Weird'
on how I haven't been ready to meet any of my friends and families
babies yet. Other young women with PH reached out to me to say they knew
how I felt, and thanked me for sharing something that they could relate
to. I saw other people share my post with their friends and family to help explain what they have gone through. This has inspired me to write more personal posts, and to share in
greater detail my experience. Personal posts are something I avoided and
only did on occasion because I didn't think it was something that other
people wanted to read. So thank you for everyone who took the time to
give me such kind feedback, and who shared my story that is not only
mine, but ours.

In simple medical terms, Pulmonary Hypertension is considered a contradiction
to pregnancy. Pregnancy for women with PH increases the risk of death
for both the mother and child. Almost every organ is affected by
pregnancy. The most notable change is the increase in blood volume
within the cardiovascular system, which is something that could be
potentially fatal for someone with Pulmonary Hypertension. Another issue
is that many PH medications cause terrible birth defects- so if a woman
with PH were to risk it and try to carry their own child, they may have
discontinue some of their medications which are required to help slow
down the progression of the disease.

Not being able to get pregnant because of a disease is weird and complex. It is frustrating because many of us with PH are fertile. This means if I were to get pregnant, it would not be a happy miracle (like most circumstances where someone cannot get pregnant due to fertility issues.) It could turn into a life or death situation. As a feminist, I also realize how heavily society places being a mother on women. Part of me fears that I will never be a good enough partner because I cannot provide a biological family, along with all the other worries associated with PH.

At age 25 I was advised that I had PH, and that pregnancy would carry a 30-56% fatality rate for someone like me. It was a few days before Christmas. I had also just found out that I had Stage 3-4 Pulmonary Hypertension and that I had maybe 5-10 years to live (maybe I will talk more about my diagnosis in the future.) At this point I was given too many losses all at once. While I knew that I wanted children, I also knew that I could not deal with that emotional blow at that time. My main priority had to be getting better, so I tried my best to focus my attention on that. I stored the emotional loss somewhere buried in my mind to deal with once I was better equipped to do so.

Several months had passed after diagnosis. The first winter after diagnosis felt long and the days melted together. When the snow had melted I was sent to see a gynecologist at the recommendation of my specialist. It seemed like every doctor was worried about me getting pregnant- as if I get pregnant as easily as one catches a cold. At this point I was so sick I was using motorized scooters in the mall, relied on the help of my mother to change out of my sweat pants into my pajamas, and I couldn't shower. Getting pregnant was just about as likely as me passing grade 10 math. (Spoiler alert- I didn't pass grade 10 math. Thanks a lot Mr. Young.) I called the gyno office in advance to warn them that it was simply too soon to talk about my situation. However, I believed that I was showing signs of a hormone problem and would like to discuss that with then. I was told that this was fine, and went for my appointment.

I went to the appointment with my father. The building did not have any accessible parking, so we had to park half a block away from the building. It was at this point that I knew the appointment was not going to go as planned. The office was painted in soft colours- colours that had faded over time in the dated office. To the right was a Fischer-Price child sized plastic house covered in sticky finger prints. Behind the activity center was a collage of all the babies delivered by the doctor's from the office I was in. The collage expanded across the wall, engulfing the entire office. I watched pregnant women come in and out of the office. I realized that this was an office most women went to for something happy and joyous. It was not set up or designed for someone in my position. Instead it was a painful reminder of all the things I cannot have. I slumped into a chair trying to hold back tears. I grabbed a pamphlet to distract myself. The pamphlet was about saving the stem cells from umbilical cords to help with various diseases like Cancer. At this point I couldn't hold back my tears. I couldn't have a baby, or stem cell therapy (which I feel could possibly help some forms of PH- but what do I know? I only went to school for Fine Arts.)

Eventually I was called back to see a nurse for preliminary testing before I saw the doctor. The nurse asked how I was dealing with my diagnosis. That was a question I had been asked a lot in the months prior. It was a question I wished people didn't ask because there was no good way to answer. It turned out the doctor I was supposed to see had a brain aneurysm and was off to recover. In her place was a doctor not much older than myself. My previous phone call advising that it was too soon to discuss my current situation was out the window. She showed me different diagrams and pamphlets to ensure pregnancy never happened. I broke down and really started crying. I was ugly crying. She handed me a box of tissues and called me 'sweetie.' It was the first time it felt like a doctor a could slightly understand what I was going through. Nearly every woman could imagine what it would be like to find out they could not get pregnant.

However, she still had a job to do. Her top recommendation was an IUD that Erin Brockovich has launched a campaign against. I turned down all methods that contained hormones. I didn't feel comfortable taking any more medication, especially something that contained hormones. I asked about having tubal ligation done, but she recommended that I stay awake for the surgery because anesthesia is usually avoided for people with PH. I left doctor's office that day without anything but a bigger emotional wound. Again, I told myself to focus on getting better and worry about this later. I had to prioritize my loses and gain back whatever pieces I could.

Now 27, I imagined myself married working towards having children in the
next year or two. In reality, I live at home with my parents (if I call them my roommates, it doesn't sound as bad, right?) left my job, and
alternate between sweat pants (aka day-time pajamas) and actual pajamas to sleep
in. My years at university did not prepare me for this, but nothing really could have.

Since diagnosis I have heard conflicting information on whether I (and other women with PH) could safely get pregnant or not. I asked one doctor if I could take a certain medication, he said no because it causes infertility. Did you take that all in? What he said was both cruel and ironic. I asked him why he would even try to use that as a reason for me to not take the medication. His answer was that it is possible that women with PH could get pregnant in the future. I was furious. When I went to not one, but two consultations about tubal ligation (which is permanent) I was never talked out of the procedure. I called in sick to work that day.

I realize that getting pregnant isn't the only way to have children. There is adoption and surrogacy. I am totally okay with adoption. In fact, I have always wanted to adopt and worked with adoptive kids at a child care centre that I worked at. As someone who is still fairly newly diagnosed I still have a lot of fears and concerns about having children. It pains me to think I would not get to be the mother I want to be, or that I may not get to be here for all of the milestones. I wouldn't want anyone to resent me if I could not be the mother I dream of, or couldn't be there to see their first day of school or their wedding. Thinking about it now puts a pit in my stomach. For me, the greatest loss isn't that I can't have biological children. The greatest loss is that I feel like I can't or shouldn't have a family. As if I can't invest in my future. Maybe these (reasonable) fears are something that will fade overtime, but for now I feel like there is still a lot of uncertainty surrounding my health and future.

This post isn't to say that if you have Pulmonary Hypertension that you cannot have a family.There have been several women who have posted their stories on this blog who have adopted and they have wonderful families. I have also spoken to a few ladies with PH who have gotten pregnant and have given birth after diagnosis. There are more and more successful stories for women with PH who have given birth. (The Beth Israel hospital has been in the news a lot lately for this very reason.) I just felt it was important to share my voice and experience about this difficult topic because it is fairly taboo to talk about this publicly.

Thursday, 20 August 2015

By Perry Mamigonian

When I was diagnosed with pulmonary hypertension at age 48,
I thought my life was over. The truth is, it was a new beginning.This is my story of how I learned I was wrong.

After my PH diagnosis I was relieved to finally know what
was wrong with me, but nothing could prepare me for the changes it would cause
in my life. Being middle-aged, single and unattached, the farthest thing from
my mind at that point was pursuing a relationship. Even as time passed and I
began adjusting to my “new normal,” a romantic relationship seemed
unattainable. My PH forced me to stop working, and coupled with the financial and
medical burdens I didn’t feel like much of a dateable commodity at that
point.

But my reticence began to change when I met another PH
patient at a conference in Florida. Susie Alvarez and I met by chance while
volunteering to work at the event.While
we were both aware of each other through our mutual work as support group
leaders, we had never met in person. I was immediately struck by her
intelligence (it’s always been an attractive quality to me) and when she told
me that she was a 20 year long-term survivor, I instinctively reached out and
hugged her. And that was it – we didn’t see each other again during the
conference. I don’t know why I didn’t pursue her then, but I’m pretty sure my
subconscious still branded myself as “undateable.”

Several months later we were both selected by PHA to
participate in a leaders’ training conference in Silver Spring, MD, where we
got the chance to spend quality time together. One night a group of leaders went out to
dinner and afterwards Susie and I took a long walk together through the city.
We shared our feelings about living with PH, being support group leaders and
life in general. Susie’s experience as a long-term survivor had given her incredible
empathy, wisdom and humility, and I began to rapidly develop admiration for
her. And while I still lacked the
confidence to pursue a relationship, I was satisfied just to be her friend (I
should point out that while Susie and I both live in California, we are 200
miles apart, so the long-distance factor didn’t help, either).

Over the next year we began seeing each other at PH events
throughout the state, increasingly enjoying our time together. While I was
slowly becoming aware of my feelings for her, our distance apart and my lack of
confidence still left me satisfied with just being her “friend.” I didn’t think
another “PH’er” could even accept me.

As I suppose all modern relationships evolve, we began
communicating more often through our electronic devices. Emails, texts and cell phone calls dominated
our contact when we were apart, and would soon lead to an innocent quip that would
reveal my feelings for her.

Several weeks earlier I had given Susie some spicy peppers
grown in my garden. One night I received a text from her remarking how good
they tasted in her homemade soup.My
reply was, “Yes, they’re sweet and hot – just like you.” Quickly I received a
phone call from her asking me to explain what I meant. “Were you flirting with
me?” she asked. “Yesssss,” I slowly admitted. “Perry, are you attracted to me?”
“Yessss,” I again slowly admitted. “Oh!
Then why didn’t you just say so?” (Susie’s ability to cut to the point has
always impressed me). I began to explain
how I felt “undateable” and that I didn’t want to risk losing our friendship if
she rejected me. Susie explained to me that I was wrong, that having PH is no
reason to deny ourselves the things that make life worth living. If anything,
it’s a reason to embrace them even more (her wisdom is another reason I fell
for her).

We’ve been together for almost two years now, and the fact
that we found each other through our PH seems like a miracle to me. We kid about
being each other’s caregiver, but Susie’s experience has been such a positive
influence on my life.I’m taking better care
of myself because of her, and while we both know the risks we face, we also
know that it’s a bigger tragedy to deny ourselves the opportunity to be in
love.

Sometimes I think back when I felt “undateable” and remember
how Susie showed me that I was wrong. It wasn’t PH – it was my own
misperceptions and lack of confidence. So if I were to give advice to someone,
I would tell them to have confidence in your positive qualities and believe in
yourself. If someone rejects you because of your PH, then they’re the one with
the problem, not you.Don’t give up on
hope. Life is filled with examples of people overcoming difficulties to succeed
and thrive, and love is more powerful than we realize.

Friday, 14 August 2015

Hi everyone! My name is Astrid and I am 22 years old. I’m a newly diagnosed IPAH patient. I was diagnosed about 3.5 months ago and I live in The Netherlands.

It all started in 2014. I
was passing out while I was doing sports. I did not think about it much until
the

beginning of January 2015. I started to get extremely tired and I could not walk for 100 meters without gasping for air or getting dizzy. I also had
palpitations. I could not work (I work as a registered nurse at a local
hospital) and I was too tired to follow my classes (I was doing a bachelor in anesthetic
and ambulance studies). I had no idea what was happening to me. The only thing
I knew was that I needed to see the family doctor as soon as possible to get it
checked. She thought I had some viral infection and I went home.

My
symptoms were worsening and I felt so bad that I went to the ER on April the
17th. After some tests at the ER they were thinking about Pulmonary
Hypertension. I knew what it was because of my medical background and I was so
shocked! That evening I had an emergency RHC and my mean pressures were in the
120’s. My heart was exhausted and I was in NYHA (WHO) class 4. I went immediately to
ICU and started with Veletri. I was there for 8 days. My brother returned
immediately from his travels in Venezuela, I knew this was serious.

They were
increasing the dosage of Veletri day by day. It was a pain in the butt because
of the side effects. However, the nurses and doctors at the ICU were very nice
and attentive, which made everything a bit better. While I was laying over
there I always stayed positive. When I heard I would be attached to a pump 24/7
for the next years or even my whole life it was hard but I was thinking that if
I could live a normal life with this pump I couldn´t care less. They told me they
did not know if the medication would work out for me because of my high mean pressure,
so there were some serious doubts about my recovery. However, I never lost hope.
In the back of my mind, I knew my story was going to be a different one. After
2.5 weeks I was discharged from the hospital and went home to my parents house.

First
time riding my bike again since diagnosis!

The
first week of being home I was walking the dog again. THANKGOD! I was not out
of breath anymore or neither feeling my heart pounding out of my chest. Day by
day it got better. The second week after being discharged I was even riding my
bike again. I live in The Netherlands so we do everything by bike over here. It
was so weird and above all expectations. Every time I was riding my bike again
I had tears of joy. I went back to my own apartment and started living on my
own again.

In
July I started working again at the local hospital. Because of the things I
went through I started to realize even more what being a nurse is all about.
The negative thing was that I decided to quit my studies because of some
serious delays. My life is pretty normal right now besides of having infusion
therapy 24/7. A couple of weeks ago I had my first echo since the diagnosis. My
pressures downsized enormously and my heart was in pretty good condition again.
It does not seem to suffer from the pressure anymore. My pressures are still
above the normal range though. I went from class 4 to 1+. I hope to get more better in time. I also
started to eat cleaner and do (basic) work-outs. It is still impossible for me
to do running but that is fine with me.

This
week I had some great news. My PH specialist wants me to switch from the
infusion therapy to oral medication. This process takes a couple of months and
I just started. I need to have a lot of patience and faith. I hope it all goes
well. I am a little nervous, but even more excited to have a look at my future
results.

3 months after diagnosis

What
I want to say to all (new) PH patients: have hope and faith! There are better
days to come. On some days life is all about dreams, hopes and visions for the
future. But there are some days where life is just about putting one foot in
front of the other and that is okay. We need to remember that researchers are
doing the best they can for us day by day. I have noticed that new medications
are being introduced every year. Hopefully these new coming medications will
keep us stable.

At
last I want to thank my parents, my brother, my boyfriend, my friends, my PH
nurse Nicole and my PH specialist Dr. Heijdra. Without them I would not feel as
good as I am doing today.

Wednesday, 12 August 2015

Coming to terms with a diagnosis like Pulmonary Hypertension is a difficult task. Being diagnosed with Pulmonary Hypertension comes with a handful of devastations.

Have you ever watched that episode of The Simpson's called Bart of Darkness? You know, the one where Bart breaks his leg and becomes all "isolated and weird?" In a strange way, that kind of describes my life after diagnosis. While I don't spy on my neighbors like Bart does in the episode, I have become isolated and weird because I can't partake in many of the milestones my friends are currently enjoying. Maybe I will get there someday, maybe I won't. Sometimes it is easier to keep to myself than to try and throw myself into a world it sometimes feel like I don't belong in anymore. In the episode Bart of Darkness, Bart breaks his leg during the summer after Homer builds a pool. All of his friends want to swim (which he obviously cannot do,) so he stuck in his room all day by himself. In a strange cathartic way, I find myself relating my life to a small theme in this episode.

One of the first things I found out was that this disease (that I had never, ever heard of before,) is both incurable and fatal. The second blow I learned was if you are female with PH you cannot get pregnant because of the high mortality rate associated with PH (for both the mother and child.)

For these reasons and more, I sometimes find it extremely challenging to relate with my peers. I am now in my later 20's. I am at an age where it seems like nearly everyone on my Facebook is starting a new chapter in their life. While I am very happy that my friends get to experience these exciting things, it is one of the most difficult pills to swallow. Even harder than the 40 mg of boner pills I swallow each morning to slow down the process of my body betraying me. Unless you are in a similar situation, you can only imagine how hard it is to hear about engagements, weddings, pregnancy, babies, moving into a new place, starting a new job, going on vacation, being able to go on a hike through the woods or the thing I miss most of all- going to a concert.

Even though it sometimes feels like my life stopped when I was diagnosed, I realize the world must keep spinning. However, it can be hard to think about or hear about all the things I miss doing, or hearing about the things I used to plan on doing. I haven't been able to face any my friends or family who recently had a baby because I have no idea how I would react. Sometimes I see a baby or toddler at the mall or at a restaurant and I tear up, or feel this pit in my stomach. I wouldn't want to cry while meeting their baby- that wouldn't be fun for anyone.

I resigned from my job in June, which was a very difficult decision to make. It was my first good job. Just before diagnosis it felt like I was finally growing up. I could see myself doing more within the company. I was saving to move out. I was talking about getting married. I hope to one day do these things, or some of these things, but I don't know what will happen. I hate the idea that at 27 I could possibility be retired, may never get that dream job, move out, get married, have kids, or being healthy enough to walk up a hill ever again.

Sometimes my friends complain that they feel they are too old to
accomplish certain things- like relationships or jobs. If you think you
would be too young to die, please know that you are not too old to
accomplish your goals or find love. If you are not married at 30 it
doesn't mean it won't happen- it just hasn't happened yet. The same
advice goes for myself. Maybe one day I can have some expected
milestones that have now become a sought after luxury.

One of the biggest blows I learned about a PH diagnosis is that some of us with PH are disabled, or will become disabled. Unfortunately, I am disabled and it happened rather quickly. This disability also challenges what society believes they know about physical limitations. The visual cue in society for to recognize disabilities is a wheel chair. The special parking pass that I have allows me to use a spot designated for people with special needs. This VIP parking pass (or as my dad calls it, my princess parking) has a picture of a stick figure in a wheel chair, which doesn't represent my disability. On more than one occasion people have "judged me with their eyes" (especially since I stopped using oxygen...against my doctor's orders.) The difference between me and that stick figure in a wheelchair is that my heart and lungs are failing. This image should be thought of as an umbrella term, not a definition for people with physical limitations and special needs. My parents like to say they don't see me as being disabled. The problem is virtually no one else does either. While having a positive spirit is important while facing any illness- it doesn't make it any easier to go up a flight a stairs. I may still have my legs, but my body would be useless without a working heart and lungs.

For all of these reasons, I have become weird and isolated. Sometimes I have to pretend that my life before all of this never happened. It hurts too much to think about how it felt like I had the whole world in front of me. Now I am not really sure where my future lies. I know no one really knows what the future holds, but it is different once you have had a handful of doctors play psychic with you. Each one trying to guess how many years you have left, when you will get worse, and so on and so forth.

This summer I have tried harder to get out there, and try to get whatever parts of my life back that I can. Last summer I stayed in everyday, avoiding my friends and family because I wasn't sure what I could even talk about. This year I have found lots to do. I went swimming (okay, I stood in a pool) which is something I never would have dreamed of doing last summer. While I can't really go to parties anymore, my boyfriend's close friends have regular game nights. I might not be able to stay very late, or eat their yummy snacks, but board games are something I can still do! It is a great distraction and it gives everyone something to talk about. I have met close friends and family for coffee and have learned that it is okay to talk about my PH and even complain about it to them, the same way they discuss challenging things in their life. I have even stayed over night in a hotel with my boyfriend for a mini vacation. Before we used to travel a little further, and stay a little longer, but again, I did something I didn't think I could do last year. In some ways I held myself back hoping that I would do all of these things "once I get better." This might be as good as I get (technically with this disease you're not supposed to get "better," but the premise of this blog is to challenge that idea.) I decided I cannot wait for something that may never happen to start trying to live my life again.

Sometimes life takes you places you didn't plan on going, but it is up to you to keep doing what you can in those situations. When life gives you lemons, use the lemon juice in a warm detox water in the morning or whatever.